Patients: the essential ingredient in drug research

Increased patient involvement can make the difference between getting a treatment accepted or rejected by the target market.

Patient involvement at every level is
critical, if you want treatments to be accepted and adopted. Here’s an
unavoidable truth: drug development is a costly business, and always will be.
The expense, however, is worth every penny if lives are saved and general
health is improved. Cost can never be justified, though, if the patients fail
to take treatments. In spite of robust marketing in healthcare, billions of pounds may as well be
thrown down the drain if medication is ignored, so the question must be asked:
why produce the drugs in the first place?To medical
experts, of course, this question is always answered at the point of
production. Why else, indeed, would intelligent people choose to pursue a
course of action? When drugs aren’t accepted, however, it’s because the experts
have missed a vital piece of the jigsaw: patient involvement.Including
patients in every part of the process – from research, to trials, to
development – is not just a gesture of care or goodwill. It is essential if we
are to know whether or not a drug really
works, because human beings have one thing guinea pigs don’t: free will. A cure can only exist if it
is accepted first.

So how,
then, can patients be better involved in the treatment process?
Working with patients, not on themThe majority of
patients don’t have medical qualifications, but that doesn’t stop them having sound
patient insights based on a grasp of science – especially when it comes to
their own bodies.Bodies such
as the Research and Innovation Forum (at University College London) exist
to make patient involvement the
cornerstone of research, but these aren’t available to everyone. At a more
local level, researchers can make leaps and bounds with ongoing input from
patients – and not just from asking the right questions and listening to
opinions. A case in point is the ‘six-minute walk test’ used on Duchenne
muscular dystrophy sufferers, wherein body movement is tested by ‘shoot ‘em up’
video games. This method is not only fun for the patients, but highly effective
in getting accurate results. But best of all, it takes into account what
particular patients want (in this case young men), and in so doing brings
satisfaction to sufferers who, as a result, develop trust in pharma researchers.

With trust,
a working relationship can be formed between patients (of all ages and social
groups) and experts. By including patients in all stages of the process, data
can be more fruitful and accurate and, as a result, the right drugs can then be
perfected and rolled out.
Sharing results, with clarityPatient involvement
should not end with test participation. A pat on the back with a “thank you and
goodbye” only serves to alienate and infuriate patients – as well as leave them
uncertain about their own futures.

Making
results visible gives a sense of inclusion, and enables patients to feel they
have some control over their wellbeing. They can assess their conditions more
thoroughly, and understand their situations and take positive action as a
result. UCL’s Comprehensive Biomedical Research Centre, for example, has a HIV database
which is accessible to patients. This empowers sufferers to analyse data in
their own time, whilst giving reassurance that progress is being made in
fighting the disease.
Pharma companies
need to remember that clarity is key in sharing results. Lay people aren’t
experts, and so jargon and industry-specific speech must be ‘toned down’ or
removed completely. In broader terms, effective medical communication is about entering into the kind of
dialogue that is best understood. This means engagement using the most relevant
patient platforms – be they social media, community groups, blogging/video
sites and wherever else patients ‘hang out’. But above all, communication is
about listening. If you understand how patients ‘speak’, you will understand
how to speak to them – and be heard.‘Patient involvement’ is not just a
gimmick, but an essential ingredient in drug research because, quite simply,
the patient’s input is not merely a boost to any research team. It is essential for success, because the
knowledge and understanding of patients is perhaps as valuable – if not more so
– than any trial data when it comes to fighting disease and bad health.